My name is Lee Daglish. My wife carolyn died on Xmas eve 2020 just 10 month after diagnosis of having Motor Neurone Disease, she was 36. She was a great mother to our twin daughters Emily and Olivia who had to watch their Mam deteriorate rapidly at home in her hospital bed. It started in her legs which meant she had trouble walking then within a couple of months she couldn’t walk at all, then it moved to her arms and soon she was fully paralysed. Then it attacked her lungs meaning she had to use a ventilator 24/7 to stay alive. She started losing her voice in the later stages and we had to get an eye gaze computer so she could talk through the computer using her eyes to focus on letters. This was hard enough for carolyn to deal with but all the time she was terrified of leaving the girls and myself and also petrified of what was happening to herself. Imagine laying in bed unable to move at all, hooked up to a machine to help you breath and unable to speak and tell those you love how you feel. She was also told she couldn’t eat or drink anymore at the end as this was causing problems with her lungs as her body couldn’t stop food or water going the wrong way.
Carolyn’s last two weeks of her life were spent in hospital where she was unable to see her daughters and only managed to spend the day before her death with us all at the palliative care ward. I got a call on the early hours of Xmas eve saying she was a bit upset so I went straight to hospital and she passed away not long after I got there.
Carolyn suffered tremendously mentally and physically with MND, it has no cure and no medicines to help except a tablet which may or may not extend your life by a couple of month.
MND needs more money to help find a cure and also to help the people living with this terrible disease access the support and equipment they need.
Carolyn was everything to the our daughters and myself, we did everything together. Carolyn went from loving being up mountains hiking to spending her days locked in her own body laying in a hospital bed scared. Please help if you can. To many people have to go through what we have.

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